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The purpose of this paper is twofold: to explore the existing evidence around dementia services and interrogate the overarching UK policy development relating to service inclusion of black and minoritised groups. The paper will go on to identify the implications for the dementia wellness pathway and make recommendations regarding how services can be more inclusive.

This paper examines the policy/practice landscape around dementia care provision and observes if lessons can be learnt to improve health outcomes for people living with dementia from black and minoritised communities.

A review of dementia policy demonstrates how opportunities to improve the awareness, diagnosis and post-diagnostic support for minoritised communities are being missed. The outcomes of this mean that individuals are denied vital treatment and support, which could enhance quality of life and delay the progression of dementia.

The authors’ premise is that not meeting the dementia support needs of less-heard communities has negative financial as well as social and health-related outcomes and has wider resonance and implications for all stages of the dementia wellness pathway. Moreover, there is a legal responsibility for public services to provide culturally sensitive, responsive, appropriate and available care, to all people, without discrimination.

This paper offers a valuable review of policy and practice around dementia care in the UK and makes recommendations to improve health outcomes for people living with dementia from black and minoritised communities.

The purpose of this paper is to present the views of people living with dementia in extra care housing (ECH). This is a model of housing with care and support aiming to support older people, including those with dementia, to live independently. Previous research identifies benefits but is predominantly derived from third-party accounts, with the voices of those living with dementia in ECH significantly absent.

This study adopted a qualitative approach conducting 100 interviews across 8 ECH schemes in England. Over half of the interviews were conducted with people living with dementia and their families with the remainder involving staff and commissioners.

Findings suggest there are a range of benefits including owning your own home, having a safe, age friendly location with flexible support, social interaction and continuing to live as a couple. Challenges included availability of staff, flexible resourcing, loneliness and the advancing symptoms of dementia.

Despite efforts to create an inclusive, diverse sample, the participants were all White British. Participants involved were identified by gatekeepers, which may present some bias in the selection.

Whilst ECH offers benefits to people living with dementia, addressing the challenges is essential for effective dementia care. Improving staff training, promoting person-centred care and fostering an inclusive community are critical for enhancing residents’ well-being and quality of life.

This paper explored the lived experiences of residents and family members, providing new insight into the advantages and disadvantages of ECH for people living with dementia.

The purpose of this study is to describe peer support work in a men’s mental health unit from a lived experience and service user’s perspective. The intertwining of process (a lived experience perspective) and subject (the therapeutic value of peer support) leads to greater knowledge and insight into peer support for people with mental health problems.

This service user narrative draws on the extracts from a reflective journal of interactions and conversations with people with mental health problems as well as feedback from service users and staff about the value of peer support. These methods allow a first-person, service user’s, reflective and narrative account of peer support work.

Peer support work, particularly hearing voices sessions, are found to be highly therapeutic and worthwhile. They promote insight and create feelings of safety and hope in what can sometimes be a frightening and hostile ward environment. Peer support provides emotional and practical support. Sharing stories and experiences of mental illness with people leads to trust, feelings of being valued, heard and accepted as well as better experiences of care and being seen as a person first. Due to their shared experiences, peer support workers are able to befriend people with mental health problems on the ward. Peer support work bridges the gap and vacuum of care between people with mental health problems and staff. It compensates for understaffing to provide more holistic and person-centred care and support.

Lived experience/ service user perspectives and narratives on peer support are rare, particularly in a hospital setting. This article provides a rich, perhaps overlooked and hidden narrative on the nature of peer support work. People with mental health problems, like Ben, are often excluded from society, health and social care, education, employment and research. This narrative opens up a pathway to understanding peer support from a service user perspective.

In 2014, the Health Service Executive (HSE) in Ireland published its Safeguarding National Policy and Procedures (HSE, 2014). Under this policy, all agencies providing services through the social care directorate must ensure a robust culture of safeguarding is in place. Concurrent to this has been a move in social policy, practice and research to include the voice of the service user, both in terms of planning and reviewing services. (e.g. HIQA, 2012; Flanagan, 2020) This article examines whether service users with intellectual disabilities want to be involved in safeguarding plans and, if so, how that can be supported. Using focus groups service users demonstrated their knowledge of safeguarding as a concept, how they felt about the issues raised, and, crucially what they felt they would like to see happen next in addressing a safeguarding incident or concern. The focus groups took place in a large organisation providing residential services, day services, independent living supports and clinical supports. Engaging service users in planning and responding to safeguarding concerns is a fundamental principle of human rights legislation, both nationally and internationally. This study aims to highlight that it is both possible and desirable to engage fully with service users using a range of simple communication tools. For this to be implemented as routine practice in services providing support for people with intellectual disabilities, authentic leadership is required. Services will need to devote time, human resources and will need champions to get on board with the necessary culture shift.

Qualitative research examined peoples’ “lived experiences” and knowledge of safeguarding. Focus groups were used with thematic analysis highlighting common themes throughout, as guided by Braun and Clarke (2006). There were two objectives: Objective 1: measuring participant’s understanding of the safeguarding process. Objective 2: compare the potential differences between safeguarding plans devised by the participants in the focus groups, versus plans devised by trained designated officers responsible for safeguarding within the service.

Four principal themes emerged – 1. participants understanding of safeguarding; 2. restorative justice; 3. consent; and 4. high levels of emotional intelligence and compassion. Participants demonstrated that they could and did want to be involved in safeguarding planning and showed little variation in the plans compared to those completed by trained staff.

The study was completed with a small sample size in a single service in one area. It may not represent the lived experiences and knowledge of safeguarding in other services and indeed other countries. The video may have led to some priming; for instance, the Gardai in the footage being called may have resulted in the participants stating that contacting Gardai should be part of the plan. After the video was shown, there was a heightened awareness of safeguarding. This may indicate that participants are aware of safeguarding but unsure of the terminology or how to discuss it out of context.

For this to be implemented as routine practice in services providing support for people with intellectual disabilities, authentic leadership is required. Services will need to devote time and human resources and will need champions in the safeguarding arena to get on board with the shift in culture required.

While there did not appear to be many barriers to listening to participants, to progress this as a standard practice a very real shift in culture will be needed. It is important for practitioners to ask: Is the vulnerable person aware that this concern has been raised? What is known of the vulnerable person’s wishes in relation to the concern? To truly engage with service users in safeguarding plans these questions need to be more than a “tick box” exercise. This process needs to be fully embedded into a culture that promotes a person-centred, rights-based, inclusive approach as a standard rather than a one-off project. Some structural changes will be needed regarding the time given to designated officers, and what resources they can access (such as speech and language therapy). However, the real difference will be made by services operating authentic leadership that champions engagement on this scale, to fully answer the question posed by the researchers at the beginning of this report, “Whose safeguarding is it anyway?”

There appears to be little evidence of service user engagement in terms of planning and processing safeguarding responses, either in research or anecdotally.

This viewpoint paper focuses on the important role played by hospices in the UK in providing specialised end-of-life care for older people with complex needs – particularly for the growing number who choose to die at home. With demand for such care growing, the paper highlights the funding issues facing the independent hospice sector and the implications for hospices of receiving more state funding. The purpose of this paper is to highlight the challenges that hospices in the UK face in providing home-based palliative and end of life care for older people.

This a viewpoint paper informed by recent reports and research findings, as well as the author’s own work within the hospice sector.

The demand for specialised community-based and home-based palliative and end-of-life care is growing. The Covid-19 pandemic prompted wider discussion about what constitutes both “a good death” and good end-of-life care. This confirmed that most older people would prefer to end their lives free from pain, in familiar surroundings and not in hospital.

The specialised end-of-life care provided by hospices is rated highly by the regulator and the communities which they serve. In recent years, more attention has been given to providing “hospice at home” services, but coverage is limited largely due to lack of funding, the bulk of which comes from charitable fundraising. To provide a more equitable service, the fragility of the hospice funding model needs to be addressed.

If the state expands its funding of hospice care, it is important that charitable fundraising also continues to take place and is encouraged. This will help ensure that the good links between hospices and local stakeholders are maintained.

The funding of the hospice sector in the UK has been the subject of several reports both by governmental and non-governmental bodies, several in the last year. However, it is an issue of growing importance and the whole subject needs a fuller airing in academic circles.

Current and predicted continued dramatic increases in international migration and ethnocultural diversity of older adult cohorts pose challenges for health care services. Review studies on ethnoculturally diverse older adults and health care show a lack of focus on their service use experiences. This study aims to report a meta-ethnography that addresses this knowledge gap through answering the review question: How do ethnoculturally diverse older adults who are immigrants experience health careservices?

The authors applied a seven-phase method of meta-ethnography to guide the review. The authors conducted two literature searches (April 2018 and June 2020) in MEDLINE, CINAHL, Embase, Sociological Abstracts and Abstracts in Social Gerontology that yielded 17 papers eligible for review.

“There’s always something positive and something negative” is the overarching metaphor for answering the review question. Findings highlight positive and negative tensions within ethnoculturally diverse older adults’ health care use experiences of understanding and being understood, having trust in providers and the health care system, having needs, preferences and resources met and desire for self-care over dependency. The majority of experiences were negative. Tipping points towards negative experiences included language, fear, provider attitudes and behaviours, service flexibility, attitudes towards Western and traditional health care and having knowledge and resources.

The authors propose concrete actions to mitigate the tipping points. The authors discuss policy recommendations for health care system changes at the micro, meso and macro service levels to promote positive experiences and address mainstream service policy inequities.

Institutional abuse is a worldwide phenomenon with the UK also subject to several high-profile abuse scandals perpetuated on people with learning disabilities and/or mental health conditions living within institutional settings. This study aims to provide a broad perspective of safeguarding practices within institutional care to inform practice and service development in this area.

A narrative overview was undertaken of a range of empirical evidence, discussion papers, enquiry reports, reports from regulatory bodies and professional guidance to explore safeguarding practices within institutional care for individuals with learning disabilities and/or mental health conditions.

A range of literature was identified that exposed and explored abuse in this context. Three key themes were identified: failings within institutional care; safeguarding issues and concerns; and good practice within institutional care. Whilst guidance is available, standards are explicit and protocols facilitate improvement potential in this area, a consistent message was that statutory recommendations for reform have not been effective.

This paper provides an important resource for practitioners and service providers involved in institutional care. An accessible overview of both the empirical evidence and grey literature on adult safeguarding within institutional settings is provided, along with a range of standards and resources that specify practice in these settings.

This paper aims to explore the role of frontline employees (FLEs) as mediators in transformative service processes within services targeting vulnerable users.

This paper is based on a case study of the development and implementation of a dementia village, and the data consist of documents, in-depth interviews and field observations.

The analysis identifies FLEs as mediators in six different roles. These roles highlight how FLEs perform as mediators, acting in between and for vulnerable users and thus supporting their well-being. Specifically, the roles explicate the mediating role of FLEs in the design and planning of transformative changes and in daily work practices.

The different mediating roles of FLEs presented here should inform care providers and managers of how employees can become assets for supporting vulnerable users’ well-being during the design and planning stages of transformative change and through daily service work.

This paper offers novel insights into the multifaceted roles of FLEs in transformative services. The findings add to the current debate on mediation in transformative services and contribute to the literature by extending and refining the established conceptual and empirical understandings of the role of transformative service mediators in consumers’ well-being.

A region’s transforming care partnership identified that autistic adults without an intellectual disability (ID) may be falling through gaps in services when presenting with a significant emotional and/or behavioural need in the absence of a mental health diagnosis. The region’s intensive support teams (ISTs) for adults with ID therefore piloted a short-term “behavioural support service” for this population. The purpose of this paper is to evaluate this pilot.

This study represents a mixed-methods service evaluation over a four year pilot period. The quantitative component examined referral rates and demographic data of accepted and declined referrals; and length of referral episodes and Health of The Nation Outcomes Scores (HoNOS) for accepted referrals. The qualitative component used thematic analysis to identify key themes relating to reasons for referral, clinical/therapeutic needs, and the models of support that most informed assessments and interventions at individual and systems levels.

The ISTs accepted 30 referrals and declined 53. Most accepted referrals were male (83%), and under 24 years old (57%). Average HoNOS scores were above the thresholds generally associated with hospital admission. Key qualitative themes were: transitional support; sexual risks/vulnerabilities; physical aggression; domestic violence; and attachment, trauma and personality difficulties. Support mostly followed psychotherapeutic modalities couched in trauma, attachment and second- and third-wave cognitive behavioural therapies. Positive Behaviour Support (PBS) did not emerge as a model of preference for service users or professionals.

This project represents one of the first of this type for autistic adults without an ID in the UK. It provides recommendations for future service development and research, with implications for Transforming Care policy and guidance.

Ireland’s ageing population has resulted in an increasing number of older adults living with frailty. Despite growing attention towards older adults’ and health professionals’ perspectives of frailty, occupational therapy research is limited. This study aims to explore occupational therapists’ perceptions of frailty and how their perceptions impact their approach to the assessment and management of frailty.

Using qualitative descriptive design, 19 occupational therapists working with older adults participated in online focus groups. Data were analysed using thematic analysis.

Perceptions of occupational therapists were constructed into three main themes: conceptualising frailty; management of frailty; and advancing frailty practice. Findings indicate that occupational therapists perceived frailty as a multidimensional concept but highlight a reluctance to use frailty terminology with patients. Findings also suggest that although occupational therapists are involved in provision of care for older adults living with frailty, the profession’s scope is not optimised in the assessment and management of frailty.

Findings provide insight into occupational therapists’ perceptions of frailty. Development of a shared understanding of frailty between clinicians and patients and enhancement of undergraduate frailty education are recommended to progress occupational therapy’s role in frailty management.